Paediatric referral for incontinence - any experiences?

[woodstockington]

I had a thread on here last year about DD (now 9) wetting herself. Went through the usual route of testing for UTI, she had a round of antibiotics just in case but it still kept happening. GP quizzed her on any worries etc, and couldn't identify the problem. GP referred us for an appointment with Paediatric nurse but have been waiting to hear about this.

It stopped happening for a good 8 months but has started again very recently. We have just got the letter through for an appointment with the nurse next month, luckily.

Dd is suspected to be autistic and is currently waiting to be assessed. I have to manage her expectations and explain what will happen in appointments etc, to alleviate her anxiety.

Has anyone been to an appointment for a similar issue and would be able to tell me roughly what will happen, so I can talk dd through it?

Yes. DS1 was referred to the paediatric incontinence clinic at a similar age. He also had some issues with soiling and wasn't dry at night.

The nurse specialist was lovely and he didn't find the appointment stressful at all. The only "procedure" was an ultrasound of his bladder which showed that he wasn't voiding completely, and also that his bowel was full of poo which he was unaware of.

She was very good at explaining the ultrasound procedure and about putting the jelly on his stomach, and that it wouldn't hurt (there's a video here for ultrasound if she'd find it helpful and if you know that's going to happen at your appointment: What happens when my child has an Ultrasound? - What Why Hospital For Children (whatwhychildreninhospital.org.uk)

Mostly it was talking to us about his habits and what we'd tried, and giving advice. Treating ds for constipation really helped with the wetting although it took a good while to grow out of the night time wetting completely.

Do you know about the ERIC website? www.eric.org.uk - it's really great for advice and what to expect at appointments.

This is brilliant, thank you so much for taking the time to reply to me.

I had a good read through the Eric website when the issue started last year, but I'd totally forgotten about it so will have another look this evening

We're with the continence service with DS 6. Been with them since he was 3. They may get you to do a diary or complete a form first so they can assess how much fluid she's drinking and how much weeing. We also had to do a poo diary. They wanted to make sure he was drinking enough and that poos are normal. They kind of go down a process of elimination about what the cause may be. If poos are stable (e.g. going once a day type 4), they will move onto wees. If poos aren't stable or signs of constipation, they will address this first before moving onto wetting. It seems to me that in most cases, involuntary wetting is caused by constipation. They may recommend stool softener, or laxatives if poos are too big in girth or not going regularly. In our case the colon is stretched to the point it constricts the bladder and causes involuntary wetting. They routinely have scanned bladder esp before new meds. Half of the paediatric service has been meds, half is about teaching good habits. Advice has included fully voiding wees, sitting properly for poos, doing poo 'sits' half hour after eating, pooing type 4 every day. If you go down the meds route, they can advise on dosage but ultimately up to parents to feel it out and find the right dose and balance between meds. We have paediatric movicol and sodium picosulphate to address constipation and Oxybutinyn to address the wetting. Meds start low dosage and increase gradually until the right results. We are constantly reassessing meds depending on viruses, whether the weather is hot etc it is a balancing act unfortunately, especially as the meds can have an impact on eachother! But the service can give advice on this.

The appointments themselves are good, nurse is good humoured in a nice way e.g. says 'she is an expert in poo' which always makes my DS laugh. Talks about her own experiences, and that of her children. Asks questions about habits and routines. Has some props to explain how the colon works for example. Talks through poo charts. Makes some recommendations about habits...may suggest meds. The diaries mentioned before are a chore tbh but maybe you won't have to do them. We were told if we didn't do them, we risked losing the referral. The diaries were 3 non consecutive days measuring drinks and wees and timing of them (easy for a 4yo but not so much for an older child I imagine), and 2 consecutive weeks for stools...possible your service won't ask to do this but I would say this is the most labour intensive/intrusive part of our experience. They may also measure bladder capacity in the ultrasound scans. They ask to scan before wee and after wee to measure bladder capacity and how much is left after voiding.

That is helpful, thanks both. I had read about the link between constipation and wetting, but as far as I'm aware (obviously not an expert!) dd has no problems with poos. Hopefully we manage to get some answers!